Monthly Archives: November 2015

Well here’s the problem, my baby girl has been running a low grade fever for the last couple of days with a headache. Her body aches too. Now not to long ago she was a passenger in a car that was involved in an accident. She was rushed to the emergency room and diagnosed with a mild concussion, neck sprain, bruised sternum and ribs. She stayed home for two days as instructed by the ER doctor and then returned to school. Her neck stayed stiff and sore. I am contacting the physical therapist tomorrow to get her started but I am wondering if she needs to go back to the doctor. Because I have been battling Sarcoidosis for sixteen years, I am paranoid about my children not recieving the testing to rule out them from being misdiagnosed like I was. Am I paranoid or just concerned? I just don’t want my children to hurt. Just the mommy in me I guess.

Until next time, peace and blessings to all and please be safe during this holiday season.

Trouble sleeping last night due to the pain in my left side, left hip and left knee. Pain meds do not work. Looking forward to finding out exactly what is causing the pain in my left side. I have an appointment with a general surgeon on the 24th. After three long years of emergency and doctors visits, with test after test being performed there are no answers. Physicians just prescribed more and more narcotics. I want answers not drugs to cover up the problem. My family is just as frustrated as I am. When I tell doctors or nurses that I have Sarcoidosis they just look at me like a deer in headlights. Most judge me by my outer appearance before even looking into my medical history. Let me point out that all of my doctors do not fit into this category. There are a few who have a vested interest into my health; my battle with this debilitating disease known as Sarcoidosis. Living each day in pain is not easy. It’s downright hard to smile when you want to cry. Laugh when you want to hide. This is not living, but I do it anyway.

Most recently I was rushed to the emergency room because of not only the pain in my left side, but also my blood pressures were off the charts. My primary care doctor told me to get to the ER immediately. My blood pressure at the time was 215/110. The ER immediately admistered a pain medicine called Dilautin and continue to take pressure readings every 10 minutes. I was told that my potassium was low, in which I was given a potassium pill. I was also reinformed that I suffered from chronic anemia. I knew that and had given them that information during triage. I was given a blood pressure pill and I was discharged, believe it or not, after being told that I had fluid on my lungs and my BP was 188/98. Unbelievable! 😈 No one with pressure readings consistently that high, with fluid on the lungs and my medical history of Sarcoidosis should have been discharged. This is what we Sarcoidosis patients deal with on a regular basis because of the lack of knowledge of this disease. Research is needed to not only find a cure, but also to find and implement a reliable treatment plan for all its patients. Right now the drugs being used are doing more damage than are helping.

I am now and have been seeking alternative treatments to help me find relief. I have found that accupuncture and chiropractic treatments have helped tremendously, but they are not all covered under insurance. So where does that leave us chronic pain sufferers. Please don’t say, “Pain Management.” Maybe to some, but not me. I believe in getting to the source of the problem and fixing it. I don’t believe in masking the problem with drugs.

Anyhow, til next time continue to pray for me as I will surely pray for you.

My Life With Sarcoidosis

I am a married mother of three whose hobbies include watching kdramas/jdramas, reading paranormal shifter romance books and music. I also have two dogs (Jaxx and Yoshi) who are my life. They keep me calm and happy. My daily life is battling Sarcoidosis and all that it comes with. I am a Sarcoidosis Warrior and Advocate. I've been battling this very debilitating disease for about 18 yrs. and decided to help others right away by providing educational information on my first website "Lynn's World's" in 2001. I was awarded The Sarcoidosis Golden Lifesaver Award in 2003 for my support community. I started the Marilyn's Fight for Life KICK Sarcoidosis Campaign to help raise awareness in 2014 and I am a member of several Sarcoidosis support groups via social media. I thank God for my family and friends who have been my support system and without them, I don't know how I could've made it. Support Sarcoidosis Awareness by making a donation to help fund the research for a CURE for this debilitating and deadly disease. In spite of what many think, have heard or read on google; SARCOIDOSIS can kill. Many celebrities have succumbed to this disease and attention has still not announced its prevalence. Please help to raise awareness about Sarcoidosis because it is a rare, underfunded, debilitating and deadly disease. You can find more information by visiting the Foundation for Sarcoidosis Research website at: http://www.stopsarcoidosis.org/fundraising
Click on the "Marilyn's Fight for Life Campaign" logo and donate please.
I listen to all genres of music but I have to admit that I am a huge fan of my son KJ McNeill (Neo Soul/R&B), daughter Ka'miko (Neo Soul/R&B), daughter Hadar McNeill (Pop) and the maestro my hubby, Karl McNeill Sr. (Jazz/R&B/Funk) along with Asian artists like:
RAIN (Official 9th Cloud Member)
JYJ
EXO
Alex
2NE1
SHINee
MBLAQ
Lee Hi
Tiger JK & Mirah
BigBang (T.O.P., GDragon, Daesung, Taeyang and Seungri)
and many, many more ^_^
My husband and children are all professional musicians as well a recording artists in the U.S.A. We operate our own independent record label (KMSR Enterprises) and also operate a recording studio where we write, record and produce for serious artists in all genres. Please support small businesses and Independent Artists, especially KJ McNeill because he is my son. ^ ^
Again, I ask that you please make a donation to help fund research to find a cure. 😊